Condition: Charcot-Marie-Tooth (CMT)
City, State: Klamath Falls, OR
Club: Mazama High School Sparrow Club Service Hours:
Date Adopted: 10/26/2015
Cydney is a beautiful, loving, and bright six-year-old little girl who has been diagnosed with a disorder called “Charcot-Marie-Tooth, type 2E/1F.” This very rare disorder affects Cydney’s nervous, skeletal, and muscular systems. This condition is so rare that there is record of only on other person in the world with the exact same disorder.
Even before receiving the diagnosis of Charcot-Marie-Tooth (CMT), Cydney experienced medical challenges. She was born with bi-lateral hip dysplasia. Cydney’s hips didn’t go into their sockets and she wore a series of braces until she was a year and a half old. Cydney underwent hip surgery and started walking at two years old. As Cydney continued to grow, her parents noticed that she seemed to be losing function while eating, and was also falling down a lot. After enduring many tests, including MRIs and EEGs, doctors at Shriner’s Hospital discovered that CMT was behind the symptoms that Cydney was showing.
While CMT affects Cydney’s muscles throughout her body, it is the nerves in her hands, forearms, feet, and legs that are affected the most. Over time, these nerves will most likely die, which will then lead to paralysis of her feet and possibly her hands. Because Cydney’s body cannot build up muscle tone and endurance, she spends much of her time using her power wheelchair or walker, although she is able to walk short distances without them from time to time. Cydney and her family must travel to Portland every three months to meet with a team of neuromuscular doctors.
Despite all of this, Cydney has the most positive attitude and outlook on life. She is full of love and concern for others and does not use her disability as an excuse for anything. She is a “girly-girl” who likes to dress up and be fancy. She also enjoys drawing, painting, and doing other crafty things. She has a service dog named “Buddy,” whom she considers her best friend.
Cydney will be adopted as a Sparrow to Mazama High School in Klamath Falls. Mazama students will work hard to make a difference in Cydney’s life through sponsored community service and fundraising projects.